#24026 08-12-2007 06:06 AM | Joined: Jul 2007 Posts: 2 Member | OP  Member
Joined: Jul 2007 Posts: 2 | I'm finally getting around to 'joining' the club. I was diagnosed with stage IV H&N squamous cell CA with unknown primary. I had the usual lump in the neck, which I had excised 1/07. They know it metastasized-but after numerous attempts, they still haven't located a primary. I spent Feb. undergoing surgeries and scans & proceedures; they were very thorough.
Had a Power Port put in left chest and PEG tube in stomache before starting treatments; that was 35 sessions of IMRT and 2 rounds of cisplatin-could not tolerate the 3rd round. Treatment done April 24th.
Had CT scan June 6, and my ENT was convinced I needed a neck dissection, as at least one of the nodes was still larger than 1 cm. That was done Aug. 4th and I am awaiting the pathology on that. I had scar tissue built up from previous neck surgeries-that's a long story including a misdiagnosis in 2005-so he said he removed alot of lymph tissue but had no count on the nodes, yet.
I am 54 and live in mid MN. I'd love to hear from anyone with advice, info, stories, etc. It's nice to NOT feel alone in this. Gayle
Dx Jan '07 SSC w/unknown primary. 4 right nodes malignant; stg IV. Had Power Port & PEG tube, then 35X IMRT and 2 rounds cisplatin. Modified neck dissection 8/4-remaining nodes clean. Non-smker. Age 54, female. MN
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#24027 08-12-2007 07:50 AM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Gayle: You are certainly NOT alone in this! Welcome to OCF...you'll find invaluable information in the posts here, and I'm quite sure there are several posters who can relate to your diagnosis. Keep us posted regarding your progress and we'll keep you in our prayers, specifically for a positive pathology report. In the meantime, read, read, read!
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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#24028 08-13-2007 01:33 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Hi Gayle,
Welcome to OCF. Hope you have been able to find some answers to some of your Questions. Don't worry soon you will have lots of us responding to your Post.
My situation is a little different.. I had the surgery first then went into Chemo and Radiation. The side effects have left there mark, but I am slowly getting some sort of normal back. I will never be as I was before, but I am OK with what I do have.
You are NOT Alone!! Waiting for a report can drive you nuts.. I can tell you this, you will end up a professional at it. You will always be waiting for something from here on out. You will get use to it though.
As emmylou said keep reading the more you know the easier it is to understand where you are.
Take care,
Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#24029 08-13-2007 05:37 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Gayle
Welcome!! This is an amazing community of wonderful people. Personally I can't imagine Bob and I getting through his battle without this site. I am sure we would have but I am certian it would be a whole lot scarier and it is hard enough. I can't even begin to explain the value of this place. Since Bob has been C free I have been lurkin and only occassionly posting. Today he got some questionable news re a chest xray and this is the first place I ran to within minute of his teling the news. Not only for answers to questions that you will not find anywhere else but definitely for the support that comes from knowing we are not alone. I am sure there are people who will have resources and similar experiences. You can ask questions and I recommend you use the search engine too. Post anything you feel and you will find compassion, understanding and sometimes even some pretty bad humor...Keeping good thoughts for you.
Peace
Denise
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#24030 08-13-2007 07:26 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Gayle
Welcome to the OCF family(not a club lol).We are all here ready and waiting to accompany you on your journey through the unknown,and to sit a while and hold your hand if thats what you need.
Anything at all just ask.
Liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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